Elevating Interactions in Healthcare, By Jason A. Wolf, Ph.D., CPXP

"Where healthcare is going is to this idea of a commitment to the human experience of balancing the patient and family outcomes with ensuring a good caregiver provider experience" Jason A. Wolf, Ph.D.. 

 


Jason A. Wolf, Ph.D. is a passionate champion for positive patient experience #patientexperience #PtExp, organizational culture & high performance #healthcare. Dr. Wolf is the President of The Beryl Institute and founding editor of the Patient Experience Journal

The Beryl Institute

We’re a global community of practice on creating improvement on the patient experience through shared knowledge and collaboration. We have really built a global community of individuals across segments of the healthcare practice to engage in discussions on what it means to improve the healthcare environment for those both receiving and delivering care. We’ve done it through the building of educational materials resources such as thought leadership, webinars, to white paper, research and elsewhere. Also in bringing people together just in communication and networking to learn from and share with one another.

Defining Patient Experience As Outlined by The Beryl Institute  

The sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.

Those four aspects of the definition, the idea that its based on interactions. That it’s grounded on all touch points across the continuum and also in the spaces in-between. That it is ultimately the perceptions that patients, families, and their support network that are the indicators of success in experience and are all critical elements.

While it is a simple phrase, there's a great deal of complexity involved. It does bring us back the fact that in healthcare we’re in a business of humans being caring for humans beings. Therefore, if we can't get the interaction part right i.e personal interaction or clinical interaction we can really never deliver on experience promised in the kind of organizations that we build.

What we mean by culture are the means by which we deliver all those interactions. We have to get all those elements right. Its not simply just getting our checklists right or our clinical protocols correct. It's really about building a systemic solution that drives lasting, sustained outcomes and positive experience for everyone involved in the healthcare encounter.

Discussing Barriers That Hinders Achieving Patient Centered Care

The barriers to experience excellence are interesting. We can go with what the data says, which people always say that it's time, leadership isn't focused, there’s too many priorities etc. I really think that probably the biggest barrier right now is that people are still trying to get their arms around what it is. All too often we have tried to over apply tactics to what really is a systemic issue. I believe that probably one of the bigger barriers to truly providing the most positive experience, the idea of engaging people from patients and families to having patient centric principles to thinking about patient activation---all the terminologies that we use.

We’ve separated all these pieces and instead not really thinking about the systemic solution that as a human being in healthcare delivering care to human beings what is that experience we believe people deserve. Stepping back and thinking about the broader conversation of what experience can be is one of the greatest means by which we can actually overcome that barrier. I do think we get stuck in the mechanisms of healthcare all too often. Thinking about the system that we create to deliver on process and not really thought about the broader strategic impact that we hope to have. That does get in the way of our capacity to ultimately provide the best experience.

Thoughts On Technology & Its Capabilities In Improving Care Quality, Patient Safety, Patient Education, Diagnostic, Clinician Collaboration etc.

Technology is the key lever, it's one of the strategic filters of experience. In a number of ways is the means by which we now communicate with people. It's the means by which we now share information. It's the means by which we can create more efficient and expedient processes.

We would be remiss if we didn't understand that there's a technology aspect to providing better experience and better outcomes but it's not technology for technology sake. When we begin to think about building an experience that really impacts people, its the core ideas of the definition. It is then the resources that you can put in place to ensure the best in experience.

If we realize that technology is a tool in our tool bag in terms of ensuring that we can elevate experience and we use it in that way with the right strategic lens, I think it does have a significant impact. The application of technology for technology’s sake I think we’ve seen that not necessarily work to our advantage and sometimes it can even become a burden on people’s capacity to provide experience really well.

Framing The Future of Healthcare; The Importance Of Shifting Organizational Culture To Improve Patients Perception Of Care

Where healthcare is going is to this idea of a commitment to the human experience of balancing the patient and family outcomes with ensuring a good caregiver provider experience. Creating healthy folks in delivering care, ultimately ensures better outcomes for those that healthcare delivers care for. However, they have to do that in partnership.

The ability to engage in where healthcare is going, is going to be centered on this idea of partnership, co-design and co- production, engaging all voices. And, not only the creation of solutions but in the next steps forward in terms of designing what healthcare can and should be. Healthcare has got to challenge itself a bit.

I would even be so bold to say, the word and the phrase patient centric is actually a provider centric language. We are saying that we believe from healthcare that patients should be at the center of care. I had a very wise patient say to me when I was speaking in Australia, “nobody asked me if I wanted to be in the center. Do we really always want to be there?” Not to simmer from that, I think that the evolution that we’ve heard in healthcare--from doing to patients to doing for patients, to doing with patients.

We can’t see everything as linear in that way. In fact, there are moments where I think as patients and family members we know things are going to be done to us or for us, not always with us. We have to find that ability to balance between those things and create the right kind of conversations that we are able to co-create the future of healthcare.

The Role Of The Beryl Institute In Setting The Stage For Improving The Patient Experience.

The role that The Beryl Institute has is to serve as a neutral ground for this conversation. To push the boundaries of the discussion, to help elevate the thinking and create a safe space for people to share the greatest ideas and really almost circle around failures and find means for improvement. My hope is that we continue to push the experience story, not as a nice thing that healthcare has to do. We’ve always said that we believe if you think about healthcare from an integrated perspective, if you think about experience from an integrated perspective, then it is about quality, safety, service, cost, access etc.

For us it really is about continuing to elevate the integrated perspective, that all that we do in healthcare ultimately contributes to the experience people have. That in fact whether we plan for it or not people are having an experience in healthcare today.It really calls on healthcare leaders to realize that they can create that experience or just leave it to chance.

So, for us to instill a sense of strategic imperative that this isn't about satisfaction, it's not about making people happy, but its about driving the outcomes that we believe healthcare is capable of. That the people that are experiencing healthcare deserve. That will continue to be our rally and cry. That's the opportunity we have and it's the conversation we need to stay in together in terms of driving the right outcomes for healthcare today and well into the future.

Defining Empathy In The Patient Experience

We did a research on empathy, compassion, all these kind of things. We asked consumers, to what extent empathy and compassion was important to them. I was actually surprise, it came down the list. I think it's because, empathy is a healthcare centric language. A typical patient and family member out there knows what they want to see. They want to feel listened to they want to feel like they are being spoken to in a way they understand etc. Those were the things they elevated in terms of importance.

For me the lens is not to get stuck in what empathy is but to think about what does it look like in action. I’m probably less concerned about how we define empathy. How we elevate empathy and the actions that we take to ensure that patients, family members and those that are delivering care feel heard, are communicated to effectively, are engaged in ways that matters to them, then they feel what we believe empathy is.

All of those things without having to put a label on it in a way that is about us doing something but more so about engaging the folks in care themselves. We do actually amplify empathy, we do elevate the delivery of compassion by moving beyond the words to the actions. Ensuring that we engage people in those ways, that they feel as if their experiencing the things that matter to them not words that we think equate to that.

Closing Remarks

It's important that people know that The Beryl Institute is a name. We’ve been very clear that it's not and has never been about The Beryl Institute, or Jason A. Wolf, Ph.D., CPXP its about the conversation and the community that we bring together. To be able to participate in a way that we think is changing healthcare. We’re a community of practice, our job is to catalyze and get out of the way and ensure that conversations like this can thrive. Anybody that's thinking about contributing to this kind of dialogue and elevating their own contribution to healthcare that needs to happen.



Jason A Wolf, Ph.D., Website | Twitter 

The Beryl Institute Website@berylinstitute 

Patient Experience Journal Website@pxjournal

Howard Chang "The Itch to Beat Psoriasis"

"Because there's a wealth of new drugs and options for people with psoriasis. Unfortunately people can't afford them or they don't have access to them" Howard Chang, Min


Rev. Howard Chang is a psoriasis advocate, a blog writer for Everyday Health called The Itch to Beat Psoriasis. He is a social ambassador for the National Psoriasis Foundation and is also a part of their Advocacy Network in the Western Region.


Howard’s Introduction to Blogging

I started blogging for psoriasis on a site called Health Talk about eleven/twelve years ago and the site just started out with some patients that were blogging. And so I said----You know I was at a point where I was really struggling with my skin disease and had started dealing with it better and thought that it would be a great opportunity to share my experiences living with psoriasis. When I first started there were very few people who were blogging, there wasn't really that much social media at the time.

It really was an unmet need that I saw and I also saw that psoriasis being skin diseases is the kind of condition and people would try to hide from and maybe stay behind doors. They would withdraw socially, so I thought writing was a great way especially as the Internet was developing to get into people's living rooms, to speak to people who were feeling very alone with the condition and really struggling on their own.

Psoriasis & the Lack of Representation of Diverse Populations in the Media

I never really thought about being Chinese or being Asian and having Psoriasis. I just thought I have psoriasis and I want to share my story, but it's true, just in general in the media Asian Americans are not represented especially out here In the West Coast. We're a lot greater in percentage of the population is Asian and we don't really see that represented in the media.

I definitely agree with that, that there are fewer Asians out there and people who are minorities who are advocating. I go to conferences to advocate--with other advocates or psoriasis conferences and there are few Asians. I think it's something that I've become more and more aware of and proud to have been the vanguard or to really get that going and hopefully others will step into the gap as well.

Bridging the Gap with Resources

Online resources are great and there are also groups that may be meeting locally with the National Psoriasis Foundation or other organizations, advocacy organizations, but definitely the foundation is the big one that I and other advocates are part of. Online resources and getting online, there's so many more resources now than there were when I started blogging.

It's really incredible that there are advocates from all different walks of life and backgrounds that you can connect with, that you can talk to, that you can tweet or go on Instagram or Facebook and so forth to make that connection. Sometimes it's not that easy to do it locally or even with their own family.

Getting involved with Policy Advocacy

I volunteered the National Psoriasis Foundation and just recently I got more involved with advocacy and legislative work. Last few years I've gone to Sacramento which starts state capital here in California and we've worked on different health care bills that are primarily related to access to care, prescription cost, benefits things like that.

There's a wealth of new drugs and options for people with psoriasis. Unfortunately people can't afford them or they don't have access to them or they don't know about them and sometimes the legislation and just the way that the health care system which is so complicated that I don’t think anyone can really figure.

But it's inhibiting people from them to be able to get the treatments that they really could use ad needs. I started Sacramento and---just this March I was able to go to Capitol Hill as well, which is an awesome experience. It was the first time that I’ve got to do that, but I've done about four or five state advocacy days as well as the Capitol Hill day of the National Psoriasis Foundation in March.

The Foundation is the largest advocacy group in the world. It represents the eight million people in the states who have psoriasis. They’re based out in Portland but they're really national organization and they have an incredible website and that's a great place to start. Its www.psoriasis.org. It’s very easy to remember and they have pages there for all kinds of things.

There’s a patient navigation center that you can ask questions about anything and there is also an advocacy page and it's a great way to get started to see what are some ways that you can get involved. Getting on a mailing lists, writing your legislators, get involved in some local events, that kind of thing can be found on the website and you can get connected with stuff there or any of the advocates like myself who volunteer with the foundation.

Health Care Legislation, and the Power of the Patient Voice

I used to think that way too, government just seems like a big mess and (questioned) do they really do anything. It’s gridlock, but health care is one of those issues that we can't afford not to speak up about, because it affects our lives and not just our own lives but we need to raise our voices to help others as well. The meetings I've had at the different legislative offices and staff have been really incredible.

You realize that there are people like you, like to me, who have relatives or friends who have different conditions. Many of them we talk to and they say “Oh yeah I know someone with psoriasis” or “I know someone with arthritis” and this affects them too. When you make that that connection, that human connection it does make a difference, they remember you and they'll think of you as the legislation comes out.

Psoriasis, Insurers and Step Therapy

Step therapy is one of the first issues that we dealt with here in California, I think we might be a little ahead of other states in this. But step therapy has to do with insurance making you fail certain medications first, before you can try the one that is prescribed for you by your doctor. They call fail first for that reason. It’s usually cheaper medications, it's not always that maybe the deal the insurance provider has with the Pharmaceutical companies or just their cost structure. But, there's a tendency that you have to go through these other medications first.

The problem with that is if you're starting with something that may not be effective for you or maybe that you've been tried in the past but because you changed insurance providers that you're not going to get better on that. And for some conditions like arthritis you may actually end up starting to lose joints or you may lose health permanently and not be able to get that back. If the doctor says “Yeah you do need to start with step one” then that's great, but it's between you and the doctor and what the doctor thinks, and insurance should not get in the middle that.

Yeah I would love to believe that when I'm in the doctor's office and what we talk about inside is what's going to happen for my health, but unfortunately there are other people in the room. They’re hidden, but there is someone who is holding the purse strings with the insurance provider. There may be a pharmacy benefit management company, they may be others who are having a say in whether decisions are made between the doctor and myself will actually be carried out or not.

I’ll give an example of this just this last year I had one drug that was prescribed to me and insurance provider said they're not going to cover it even though it was a psoriasis drug because I was on another psoriasis drug. The whole point for them was that well there's no literature to say that these two medications will work together.

But, when you have a severe condition like myself you need to be creative and it may not be well studied, the ways the combinations, but the doctor needs to have the full toolkit in order to kind of treat. So that was a completely frustrating conversation with insurance. We petition and appealed multiple times but eventually just gave up and got it straight from the manufacturer.

Another time I wanted a phototherapy light unit, a home unit, which is only a few thousand dollars but again they said no. We went through all the appeals process and I end up buying it out of pocket with the help of friends and family. So there are many times that you have to find a way because it's your health, but you don't always get from insurance the coverage that the doctor would like you to have the medications that you need.

Howard’s Advice to People living with Psoriasis

First off, I want people to know that there are others who are going through that themselves. Before when I was with a different insurance provider I never had and these issues. Maybe just their system that if the doctor prescribed it I got it. When I moved out here and I got into a new insurance system I started having to go through pre-authorization and all these issues that I've never had to go through before.

There are others who are going through it too and patient advocacy groups is one way the foundation that we mentioned The National Psoriasis Foundation, they have staff, they have resources to help deal with insurance issues which is one of the biggest issues that they deal with when they work with patients. There are people who are advocating and people who can speak up for that, who can help them navigate this very complex system on how to get their medication, and how to get the help they need to get better.

Addressing the Complexity of the Issues Within the Healthcare System

When I was in Capitol Hill I was talking to our advocacy staff the National Psoriasis Foundation and what I gather from them is that these issues are so complex and that if you try to change one part of the system that affects another part. They're trying to be as careful as possible to not affect the system in a negative way by getting one thing and maybe hurting another area. Areas that we've been advocating, i.e removing step therapy, capping the cost of prescription drugs especially space them out for the year, etc. getting assistance for those.

Those are kinds of issues that can increase access to care and so that patients receive those with chronic illness who need medication. Patients who are getting more research and better medications but they cost a lot, so they're not able to get them, there's a way for them to get those medications. That said, I think we've come a long way cause I remember the days where if you have a preexisting condition you can forget about getting insurance individually, as a family. But I think that we---the system is still struggling to support those with chronic illness because the costs involved and exchanges struggling with costs as well. I don't know if I have the answer for fixing the problem. Suggestion: Try to understand just from a patient advocate perspective, it's seems way beyond me.

Perspective on the Future of Healthcare and the Patient Voice

I'm hopeful that the patient voice gets out more and more. It seems that in the past the doctors, pharmaceuticals companies, that everyone was impacting the system and getting what they need out of it. The patient was just passively receiving whatever was decided for them. Now that we recognize that the patient voice is so important to legislation in how we craft, message and also in the decision making. In the past it was well the doctor knows it all, he's going to prescribe you what you need and you just take it you do it, that's how I grew up.

Now it's a collaborative environment where there's so much information on the internet, there are so many people that we can talk to collaborate with. We're not doctors. I'm not a medical doctor but I know my condition.I know myself and my health better than anyone and so for me to have a voice in that and then also to just be speaking into these other arenas as well, whether it's legislation or in just how we’re to talk to patients. Sometimes we're talked to in the ways in language that is offensive or it's not sensitive, I think these are all areas that the patient voice can be elevated and have more impact.

The Itch To Beat Psoriasis

My columns on Everyday Health, it's called The Itch To Beat Psoriasis and my primary concern is the emotional and spiritual healing. I write a lot about the emotions of living with chronic illness and living with psoriasis. I also have other areas that I write about like relationships or just all those impacts that a disease can have on you that is more than just treating the disease itself. Sometimes I do talk about the latest treatments and I talk about medications. I usually relate it to just the whole person and that's my goal, that there's a holistic healing for the person. Whether there's a cure or that disease goes away or not that we can live a full active life as we would desire to. I think mental health and quality of life are issues that we're talking more and more about because we're not just treating a physical condition, but that physical condition. It's almost like a war that we're fighting and that it never ends.

It’s a day after day battle and so that kind of battle wears on you. It can be frustrating, people with psoriasis deal with chronic itch times, deal with treatments aren't working as well and so that wears on you. There is the fear the unknown. It's an autoimmune condition, inflammation can flare up at any time. All these have been shown to produce depression and anxiety even suicidal ideation and so forth. Some things I do for myself to kind of keep calm or to help with my anxiety is pray. I'm a pastor and so I really believe in kind of that quiet time, to pray and to gain perspective.

Effective Mechanisms to Cope with Psoriasis

If my body is not doing well, if my outer world not doing well, I can do something about my inner world and I could find refuge there. I kind of go deeper within. The worst my condition is, the worst my health is, the deeper I go inside. I like to do other things like exercise, I run three or four times a week and I'm very grateful I don't have arthritis like some of my fellow advocates. I get out there and exercise and play with my kids. I have hobbies, I just started to ground coffee and make espresso. Just little things that kind of keep my mind off work and off of my health that kind of thing. I have a dog to take him out for a walk. Take a bath and just use some oils that will help with my skin and relax me.

Just all kinds of ways that I learn how to cope with it. There are times where I've had to go see a counselor or to talk to a friend just about it. Sometimes I don't want to talk because it's “that again”. I don't want to bother people again because it's--but I still have a chronic condition and so I may be chronically talking to you to get support and to share about it. Having people like my wife---she doesn’t know exactly what it's like to have Psoriasis but she's very empathetic and she's a great listener.

The Role of a Supportive Social Circle

Having support, church network is supportive, they ask me “How's your skin doing?” Sometimes it takes me off guard that people are checking in. It doesn't help me if someone says “Oh I know what it's like, you know I've had this rash you know or had poison ivy or something”. I said well it's not quite the same but just to be able to say “You know what you going through must be it's really difficult and challenging” or “Is there some way I can help out?” These kind of things help when we're feeling overwhelmed. Those are things that help, that help me when I'm struggling through it.

A Call for More Patient Voices on Social Media

It's been great to see more and more people getting involved in blogging and social media and spreading the word and I think that we need even more people. If you've been helped or if you've been supported by those who have gone before who have spoken up, put themselves out there and you feel like you can do that even just a little bit, even if it's not online but just locally. Getting involved in some way it makes a difference. One person makes a difference.

I started out wanting to help one person and I found out that I did help one person when I helped others and that was me. There are so many different ways that when we help others we gain, so get out there and get involved and help that one person out. Check out my blog at Everyday Health, it’s called The Itch To Beat Psoriasis. I also have my own website called psohoward.com, my Twitter is @HChnag316 at and I also have The Itch To Beat Psoriasis page on Facebook.


Alisha M Bridges, Psoriasis & Mental Health Advocate

"I asked that elected officials, first find bills that allocate for the N.I.H and C.D.C. for research of chronic illnesses and to look at the bill for step therapy and revaluate and look at your friends and family" Alisha M. Bridges.


Alisha M. Bridges, Psoriasis & Mental Health Advocate

Psoriasis is an autoimmune disease, basically people living on with the condition have an overactive immune system which causes us to create skin cells that we don't need. Now in a normal body that does not have psoriasis the skin cells are created, replaced and die within 28 days. For someone who has psoriasis that cycle is happening within 3 days and the body cannot keep up with that passes in order to properly flake off the dead skin cells.
So with that happening the dead skin cells start to build on top of good skin. If you have psoriasis a lot of characteristics of it will be dry, inflamed patchy skin. It can be painful, it can be very itchy and it can be had a debilitating disease. It’s also associated with arthritis which is another autoimmune disease that is basically your body attacking itself within the joints. A lot of people have a misconception that psoriasis is a skin disease, but given the explanation I just gave as to how it works in your immune system you can see that it's much more than that.
I was diagnosed when I was seven years ago. It came after a case of chickenpox and I had always had plaques of dry skin on my knees and elbows, but at that time we just thought that I was just really ashy. We did not know that I was going to have to face my autoimmune disease a couple years later. After the chicken pox came which was very common when I was growing up in the late 80's early 90’s my grandmother noticed that my skin was not healing like it normally should after someone encounters the chickenpox virus.  So she took me to the dermatologist, they surveyed my skin and based on the look of my condition as well as family history of psoriasis they then been determined that that is what I had. 

Growing Up With Psoriasis  

Growing up with psoriasis as an African-American definitely has some unique challenges. My psoriasis does not look like what is in the textbook and described in the textbook as characteristics of psoriasis. So usually people will say “Well psoriasis is red inflamed patches”. Well for a person of color my plaques were not red, they were brown to a purple color.
So in one instance I've definitely faced some challenges just from a health and medical standpoint, because sometimes doctors didn't even really know if what I had was in fact psoriasis because they weren't well versed in dealing with people of color who had the disease. So that meant a lot of times a lot of misdiagnoses. I’ve been diagnosed with funguses of the skin other conditions of the skin. It was a lot of trial and error as far as different medicines that they would use just to see if something would work.
Based on the medicines that did work sometimes it was determined that I had psoriasis. Now outside of that as far as like quality of life and just interacting with other people it has definitely been a challenge. People have added more misconception when it comes to visible diseases. They automatically think you know you're contagious or I'm going to catch it or something is wrong with you. So that in itself is challenging just as a child living with a visible disease. It was then became my responsibility as a seven year old to have to explain to my peers as well as adults what I was dealing with and that's a lot to put on an adolescence.

Self Esteem  & Living With Psoriasis

It also affected my self-esteem and the want and inability to do things comfortably. And it just has affected my whole entire life. There was not a day where psoriasis did not play a role somehow in my life. It was hard for me to deal with the stress of stigma that came with psoriasis. I internalized a lot of pain and challenges that I faced. I didn’t think that those around me would understand what I was dealing with mental emotionally, not even trusted family or friends.

I kept a lot inside of what I was going through. And often times being in an adolescence I really didn't even know how to properly express those feelings, to articulate in a good way it's of people to tell them how I was truly feeling. You know you don't have many options growing know with psoriasis as a child. There’s not a lot of medical options, there's not a lot of medicines, because they don't want to try harmful substances on kids. So I really suffered emotionally and mentally and sometimes I feel that those components were way more difficult to deal with than the actual physical effects of the condition.

Retrospective Thinking;  Improving Your Overall Health

If I could go back to my younger self who was afflicted with psoriasis, I would definitely say “Don't give up”. I would say that “There is definitely a light at the end of the tunnel” and I will also tell her “To allow herself to be used where it hurts”. I feel like a lot of times difficult challenges in our lives or hurtful challenges in our lives are the things that give us purpose. I would definitely tell her “Do not give up. Allow psoriasis to give you purpose, to give you passion and to inspire others”.
I will also tell her that “There will be people who love and accept her despite her disease and that people will embrace her and people will be inspired by her story”. So just keep pushing experience, because a lot of what I've been through, a lot of the stories that I have and testimonies to give to people only came because I allow myself to experience life. Although some of those experiences were difficult, they were uncomfortable, it’s all for a greater good and a greater purpose. 

Blogging & Psoriasis

For years I hid the fact that I had psoriasis, one of which I was embarrassed, I felt alone and I felt as though people were not understand. About eight or seven years ago I just had this epiphany and I ended writing a blog post on a psoriasis support group entitled My Suicide Letter. And so the My Suicide Letter was not about a physical death, it was not about taking my own life, but it was about killing those parts of me that were insecure, that had fear, that had shame that just was embarrassed due to my disease. To kill those parts of myself so that I could truly live.
It really was nothing planned out, it was just something that I wrote in the spirit of the moment and decided to share in the psoriasis support group, because I felt like other people there could understand and could relate to those feelings that I gave within the letter. Well it almost went I guess viral on the psoriasis community and got passed along and so many people were inspired. The National Psoriasis Foundation reached out to me and invited me to their conference that was taking place that next year. I went there for the first time in my life I've seen people who have psoriasis.
I still don't really see people of color, but I finally met others who were living with this disease. Even an elementary teacher that I had seen at school when I was younger, he has psoriasis and he was at that conference.  We passed each other every day and did not realize that we both were battling the same disease because many of us live with psoriasis do so in secret. So during that conference they had a workshop about blogging and getting your story out to writing.
At that time I thought to myself “Well that's something I am comfortable with and that I can do, because I can write, share my feelings, shut the computer and go on about my day”. I don't have to be overwhelmed with like negative comments that she might feel in person and you know if I'm not comfortable with something I can just delete the post then move on about my day. So it started off as kind of like a safety net, writing behind a computer and just post on my feelings online anonymously. And then it grew into something much bigger and it really gave me the power to not only tell my story online but to tell it to anybody who I feel like needs to hear.

Patient Activism

My life and decision to become a patient advocate for psoriasis as well as mental health has given me purposes and passion and I feel like at this point in my life I'm exactly where I need to be. Every morning and I get up and do this where whether is at a conference or speaking in or message and someone online or blogging. I feel like this is where I am supposed to be, like this is where I’m most comfortable, where I’m most happy, where I find the most joy. It also has empower me to take even more consideration of my health and advocate for myself when it comes to medical professionals and doctors. I know what medicines are currently out, I know the side effects of those medicines. I have a voice in the decision of treatment options for myself. I understand the risks and I'm able to speak up for myself when I'm speaking to doctors and nurses, which a lot of people are afraid to do. Being a patient advocate definitely empowers me to just care for myself as well as others, because I know on the large spectrum of things that this will help all patients, not only ones just psoriasis but living with any type of chronic illness. The first step is to have patient advocates be the voice for the people who are kind of afraid to speak out for themselves.

Discrimination & Psoriasis

We live in a society that is very driven by physical appearance, so I having a visible disease like psoriasis definitely brings about a lot of discrimination and bullying even among grownups, it's not just kids. I have been made fun of by my peers when I was younger and I have even been made fun of by grownups on the job. When you have a visible disease it really makes you a target, and it make you an easy target because it's something that people can see and can talk about. Like if you have something like let’s say diabetes where if you don't tell anybody they absolutely don't know that you're dealing with that. Since psoriasis can be seen it causes people to isolate.
I have lots of friends who have been discriminated against at pools, they have been asked to leave and ask to bring documentation proving that what they had was not contagious. I was discriminated against at work one day a guy came up to me and told me that I was a very pretty girl but I had ugly skin and that is literally the words that he said to me.
I even remember being a college student and having to share a bathroom with my suite mates and the embarrassment of my skin flaking and no matter how much you tried to clean up behind yourself, you always left a party behind when you're living with psoriasis. That causes people to isolate, causes them to be by themselves because it's easier just to keep to yourself, compared to having to always explain what is going on with your health. And it's easier to be by yourself because you don't risk being discriminated against, teased and really just hurt emotionally by those around you.

Combating Isolation Through Patient Advocacy

There are a variety of ways that patients can advocate for themselves as well as others. From one I feel it's very important to connect with the National Psoriasis Foundation because they have an array of resources that you can use that you probably wouldn’t even know existed if it wasn't for the N.P.F. They have a one to one mentor which allows you to connect with other people.
They also have programs which allow you to reach out to your congressmen and your state if you want to advocate against step therapy or if you want certain funding to go towards research for psoriasis. That's kind of on a large scale. Another point is to get involved in support groups. We isolate a lot when we have this condition and when you isolate you’re energy of like wanting to do stuff for yourself decreases. But if you have a network around you like others with psoriasis, even if it's just online, you will start to feel empowered.
I started to feel empowered when I realized I wasn't alone and I was not by myself and I had a network of people that could help me along even when I didn't feel good emotionally or physically. Support groups are really important and they will kind of keep you aware of the latest trends that's happening in the psoriasis community.  I will also say being honest with your medical professionals. Keeping track of everything that you you have going on, how you feel, treatments that you're willing to take and treatments that you are not willing to take.
That when you get in that doctors office there is no deliberating. This is what I want to do, this is what I'm willing to do, and this is what I'm not going to do. Speak up for yourself when you go to a doctor's office it is not a dictatorship, it's a relationship. That’s like what I like to say. It’s just like you’re looking for a spouse. You tell your spouse your needs they tell you their needs and you work together to accomplish a common goal. That is the same process that it should be when you are choosing a doctor for you.

Social Media & Patient Advocacy

There are lots of ways to advocate for oneself. There are a lot of pros and cons to social media. On one hand I'm thankful for social media and the internet because without it you wouldn't that be here today. I found my voice using online platforms such as Twitter, Facebook, blogs and Instagram. It allows you to connect with other patients to see that you're not alone and it just allows you to really express yourself. On the other hand social media can be very depressing. I talk to my therapists about this all the time.

That's how I feel  although and I'm sure studies already show that there is probably an increase of depression and anxiety due to the increase of social media. For one you're bombarded constantly with the opinions of others, opinions that a lot of times people want to even have the courage to say in person but because it's an online platform they feel like they'll never ever meet you or they can hide behind a totally fake profile. They feel that they can say whatever they want no matter how insensitive it is. It also gives you kind of a false glimpse of what's really going on in a person's life.

Typically people are only going to put when there have been success online, nobody's like oh---some people you know will cry wolf and say that they're having a horrible day. But a lot of people who post you know list their relationship is like “Me and my wife or me and my husband we’re just having an amazing time and I just look so happy” and you're wondering why you can't I have that. But behind the scenes they're going through just all kinds of mess. So on one spectrum social media is great especially for Patient Advocates, on the other spectrum social media can be very overwhelming and you really have to kind of balance out how you use it in create boundaries and do what's comfortable for you.

Building A Support System

For adults living with psoriasis there are a few ways that you can build a support system. First start with your friends and family. The friends the family I would like to say are your backbone. I live with psoriasis for so long and I was afraid to tell those around me how I was truly feeling, but when I got older and got more into my advocacy I realized I missed out on the opportunity to really be supported and empowered by those around me. Your family your friends can't empower you if they don't know that something is wrong. 
If they don't know what you're feeling, if they don't know what's going on in your life. I would say start with you with your friends and family so that they can get the tools in order to help you be successful physically, mentally and emotionally. That's first. The other thing that I would like to encourage those to do is again find a support group, whether it's online or in person. There are a lot of platforms to which will allow you to share your deepest, darkest and most intimate secrets of living with this is the that you may be afraid to share with family and friends.
Other people with psoriasis won't judge you and we 100% get it. So I think that's very important in being an adult with psoriasis. Thirdly I would like to say treat your disease, whether it's holistically or whether it's with prescription medications, but don't go without treatment. When you go without treatment you increase your risk for of the diseases like heart disease, diabetes, diseases of the eye and definitely mental health issues.
That’s number one depression. So make sure you are actively attempting to treat your condition. If you're worried about concerns of price, talk to your doctor, there are many patient resources out there that will help you to get the treatment that you need. And try holistic approach, if you don't want to do medicines. Now usually those take a lot longer to work, but your life in your health depends on it.
Please do something. I would just say don't give up. You know something doesn't work, if someone's not receptive to your story, to your struggle, keep it moving because there's something that will work and there's something----there’s someone who will embrace you. So that’s the advice that I would give for adults living with psoriasis.

The Role Of Elected Officials In Funding & Resource Allocation for Psoriasis

Elected officials can help with the progression of treatments and cures for psoriasis and by making sure that they allocate funding to the NIH and CDC. When they're doing different research initiatives in order to figure out the cause of these chronic illnesses. Even if it's one particular chronic illness, like psoriasis, a lot of times when they reach discovery with our condition at least two discoveries and realizations for other conditions.
I would also like to say reevaluate the terms and conditions of step therapy. Step therapy is basically where patients are required to use cheaper treatments before they are allowed to use the more expensive ones and a lot of times that can be hard on the patient. They’re putting in their body medicines that aren't going to work for them, they're increasing their risk of symptoms and side effects and they're also wasting a lot of money and a lot of time.
 I asked that elected officials, first find bills that allocate for the NIH and C.D.C. for research of chronic illnesses and to look at the bill for step therapy and revaluate and look at your friends and family. How would you feel if it was your son, your daughter, your wife, your husband, as they were in the predicament because honestly they could be in the predicament, because chronic illnesses like psoriasis can come at any point in one's life.

Plea To Change Societal Perceptions of those Living with Psoriasis

Psoriasis is a condition that one cannot help. We do not choose to have this disease or this condition. It is not contagious. It is not something you can catch by touching someone, by having sex with them, it is an auto immune disease, which means that something within our immune system has gone haywire. I would like to encourage people to provide compassion and empathy for those that they see who are different from them.
It just does not have to be psoriasis, because of this condition any time I see someone struggling with something I'm able to empathize. I would like to also pass along the message that any chronic illness can happen to anyone at any given time. You could be perfectly healthy right now in your life and tomorrow be diagnosed with the disease that you now have to live with for the rest of your life. So, please consider how you treat others, what you say and how that may make them feel and consider that it could be you one day or someone close to you that you love.
I’m Alicia Bridges and I am a psoriasis and mental health advocate. You can find me on www.beingmeinmyownskin.com or any social media network @AliciaMBridges. That’s for Twitter, Instagram, Facebook or YouTube. My purpose in life is to be the voice for the voiceless to inspire others with my story in hopes that I create empathy and compassion among those who are the least understood.

Patient Centricity - Joy Chin, BSN, RN

"Patient centered care is achievable; it might be difficult but it is attainable. Nurses have to go in and say, this is the reason I came into this business, to make a difference in my patients lives" Joy Chin, BSN, RN.  


I’ve been a nurse for 27 years, I have graduated from Loyola University in Chicago. I’ve worked on med-surgical floors- special procedures, which is for arteriograms. I’ve gone into pre-op, where I’ve worked with getting patients ready for surgery in the perioperative area which I’m currently in the pre-admission testing.

A Day in the Life of Nurse Joy

I make sure patients paperwork are in order, ensuring patient don't cancel on the day of surgery, so if they need any kind of clearance i.e cardiac clearance that's where I come in and make sure all of that is taken care of. Now usually when my patients come in, we have a little office which is kind of nice that because you get to sit down with a patient face to face. When patients come in to who are having their procedure, firstly, you want to make sure that patients know why their there. Question; Why are you having this surgery? Did you have a second opinion? Did your doctor explain the procedure to you when you first met him or her?

It's important to make sure that the doctor is talking to the patient not a medical assistant, or event a nurse practitioner or a physician assistant should not be explaining the procedure to the patient the first time. The surgeon should be the one talking to the patent because they are the ones performing the procedures. I ensure that the patient is aware of what's going on, we ask questions about after surgery.

Where are your recovering? If the individual is having a joint replacement; Are you going to have rehabilitation? Are you going to have someone coming to your home for rehab? That's important, you want to find out if the patient lives alone. If the patient lives alone and their going home that same day, they can't go home by themselves. That needs to be told to the doctor. Questioning, did you arrange for the patient to have a 23 hour observation? Is the patient going to have a family member coming in from out of state etc.

Most of the time patients are not prepared due to time restraint when their in the doctor’s office. Patients are and I’m sorry to say this but they are kind of (treated) like an assembly line. Basically in the office a medical assistant might come in and talk to the patient, here's your PAT pre-admission testing appointment and they will fill you in. When the patient arrives they are like “can you explain this procedure to me” at which point we’re like no, the surgeon is the one doing the cutting.

We’re not doing a procedure. We’re just making sure, that you’re cleared and that no hiccups will occur on the day of surgery. Usually the patient has to be redirected back to the surgeon’s office or we’re actually being advocate for the patient doctor, and saying “Ms. Smith is still not sure why she's having this procedure, she don't know what type of procedure it will be. Are you going to make an incision, or is it going to be laparoscopic, what are you doing? This patient needs additional teaching. We then have to send the patient back to the office, mostly, their very close. Sometimes, we call a shuttle for the patient to be transported from the hospital back to the doctor’s office.

It's always about getting to the core; Do you know what you’re having? Do you know what’s happening? The patient will then respond “Well the doctor says that I need this surgery”. To which we respond, we need to know what do you think, do you think you need this surgery, do you, did you get a second opinion. We have talk to our patients, we have to build a rapport. We have to make sure the patient feels comfortable, provide a safe and secure, non-judgmental environment for the patient.

When you do that, you'll hear a lot of stuff that you didn't even ask but you’ll find out. You’ll find out that M.s Smith lost her husband a month ago, but no one knew. Then she lost her insurance, and now she's not even taking her medication because she doesn't have insurance to pay for it. Therefore, its not that the patient is being non compliant on purpose, the patient is just not being helped. Finding out, get to the core, listen to the patient.

Realism Vs. Idealism in Clinician’s Workflow.

The majority of nurses, when we come into our profession. We’re coming into our profession with this positive idealistic mindset. Saying we’re going to do good for our patients, we will make an positive impact, and make a difference in their lives. You get on the unit you have barriers. Barriers such as time restraint, we’re always pressed for time.

The nurse to patient ratio is very high, you have six patient to a nurse etc. Clinician face situations with excessive charting, double charting, you’re putting the same information in different places. They do say if it's not documented it didn't happen, however, if its documented once why do we need to have it in three different places? Documentation, high patient ratio, press for time are some of the barriers that I can think of and I’m sure they are more.

Patient Centrism

Patient centered care is achievable, it might be difficult but it is attainable. Nurses have to go in and say “this is the reason I came into this business, to make a difference in my patients lives. Therefore I’m going to set goals; even If I set goals to meet two patients needs that day. It's better than meeting non. If I go on and make small changes like make eye contact.

For example, I will touch my patient, I’m NOT going in with the computer and talk to the computer while I’m talking to my patient. I’m going to listen to what my patient is saying. I’m going to turn and then and say I hear you I feel your pain, how are you feeling this morning, how are you coping? Is there anything I can do to make your visit much more pleasant? Its about how we attack our day, When we come in and say, I know all of this is happening around me but this is what I’m going to for my patient.

Social Determinants of Health

There are different ways of inquiring about social determinants of health. Finding out where the patient lives, how is the patient living condition at home, is the patient having difficulty providing, funds to obtain their medication? How about food, are they able to provide for themselves? Will they have to use the money that they will be buying their medication to buy food and pay their rent? This is how you find out these things, by communicating with your patient and inquiring about where, the need is lacking.

Social service, case management at work I usually try to always get a consult. Not by discharge, but try to get that ahead of time. By the time of the hospitalization so that they can figure out where the patient will need help. Inquiring about basic needs, family member, neighbors that can help. We just need to facilitate the line between where this patient is coming from and meet this patient at their level, at their preference.

We need to treat the patient to how they can adopt to the healthcare. Not like, okay you’re supposed to be meeting us at this level, so I’m sorry. No, that's not what we’re supposed to be helping patients by asking them how we can be beneficial to them. Getting the patient involved in their decision making, can you share how you would like us to take care of you? What will help in your condition. Finding out where the patient is at.

When the patient comes in and they have a wall up, almost saying, you’re the nurse I’m the patient, and you think I don't know about myself but I do. You a s a nurse is basically going to say, Ms. Smith tell me about yourself. Patients do not want you in their face telling them, this is what you need to do, this is how it's going to be. Instead, do you prefer to have your treatment, in the middle because you tend to be up in the middle of the day?

How can we work around that to make everything goes smoothly for you”? Do to prefer to go to physical therapy, mid day because your arthritis acts up in the morning?” Or the nurse should be talking to the physical therapist, asking what time they will arrive to tend to Ms. smith. Should we medicate her 30-45 minutes before she goes to physical therapy?

For Patients

If the patient knows that you’re willing to work with them and meet them at their level. i/e non-judgmental environment, you have to be able to provide that for them. I try to encourage my patients to ask a lot of questions. The department that I’m in, I encourage a lot of questions, because patients tend to say “the doctor said this is how it's supposed to be so that's it.I say question the doctor, don't be afraid to question the doctor, If you don't feel comfortable within yourself ask is this the only choice that I have or do I have a second choice? Do I have to have this surgery now? Can it be delayed, can I have conservative therapy, before actually going into surgery. They will meet you at your level. Have your list, bring it with you to the doctor’s office, and check off questions as they are answered.Don't leave that office, do not leave that office, do not get up out that chair until all of your questions are answered. I try to empower my patients, exposing, we're not trying to cripple you, when you leave and go back to your pre-existing hospitalization state, we're not going to be there with you. I want you to be equipped with this tool. So that when you encourage additional healthcare services you are able to interact and feel at ease with what you have on board.

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